Where to go from here?

My Mac Speech microphone isn't working anymore. It is under warranty so I will eventually get it fixed. For now, I am back to typing with one hand and dictating my blogs to Ms. L.

I recently went to the doctor to have an MRI done and the tumor is growing, although I am not sure how fast. It is the same kind of tumor as before. It is the reason for the numbness on my right side and the only reason for the weakness on my left side. The doctor said that if he were going to have prescribed Avastin to me, it would have been now. He recommended more chemo, one I have not tried before called CBNU. No word yet on how long I will be on drugs. I go back to the doctor on July 23, so we'll see what happens.

I am still having bad headaches, and I recently had a major toothache and ended up having a tooth removed (for those in the know, they removed the #18 tooth on the bottom lower left).

I am still looking for a new apartment and would like one with a shower that has easy access (one I can just walk into and that doesn't have a tub I need to step over). Things in my life are still pretty sad and hopeless, and I just don't know where to go from here.

On a happier note, I went to a bbq today, and Jason definitely knows how to make some good meat!

Broadcasting live

22+at
It is Saturday, May 22, 2010 and I am dictating to my computer life tonight for the very first time to tell all of you that I am now a proud owner of MacSpeech Dictate and MacSpeech scribe which will help me use the computer like I used to before my arm and leg went weak. Please bear with me as I am still learning how to talk to a computer and make it say what I wanted to say and how I want to say it. So far the whole installation and training process of this new software has taken me an hour it's kind of fun, using this program -- but I miss the ability to do it all by myself. But the software, is quite impressive I must say -- so I think I will get over my frustration just a little bit. I promise Jennifer, scratch, undo with I'm trying to erase that it's not working I did not need that, after Jennifer and the instructions said to say scratch that but it did not work few I mean I am still learning. I do actually have to say. After the end of a sentence.That sentence was supposed to say, that I actually have to say the word " period When ending a sentence.

Just nod if you can hear me

No updates on my arm and leg, just the same old same old there. I am still going to physical therapy in Sacramento but the process is moving too slow and I am getting frustrated and depressed about the whole thing.

I am also feeling seriously depressed from all the weight I’ve gained from the medications, and since I can’t be very active, it doesn’t help the problem much.

On a somewhat bright note, I am looking in going to Health South in Bakersfield to try and get back to being able to move faster. This would not be a permanent move. Unfortunately, I am waiting to hear back to see if my health insurance was approved or not. These places take people more seriously if they are recommended by a hospital, and not by someone who is at home. Well if they only knew my condition….

On a very happy note, Happy Easter to everyone. Let’s all remember what this day really means to Christians.

** dictated by Carina, typed by Lesley

I Got A Feeling….

Today’s gonna be a good good day!

I have a lot to do today and I am anxious to get started. It’s only 5:40 in the morning and I’m wide awake. Today will be my fifth hyperbaric treatment. Everybody asks me what it’s like. It’s kind of hard to describe, but I’ll try.

Imagine a fancy tanning bed. Everyday at 2:00 p.m. I get up onto a gurney and I’m rolled into a big plastic chamber. For an hour, I lie down and try to stretch the left side of my body to get it working again. There is a TV on if I want to watch it, otherwise I’m just lying there, breathing pure oxygen for an hour. It has started to dry out my face. My skin is very dry and gross. It doesn’t hurt, yawning gets old, but other than that, it’s just a fancy nap time. I have 35 more treatments after today. I’ll be done sometime by the end of February.

It has now been over 3 weeks since I have been able to really move my left arm and leg like normal. I am still mad at what happened. I don’t want to spend a lot of time trying to figure out why or how it happened. I just want to use my arm again.

I am supposed to have a physical therapy evaluation today. I am still waiting for my appointment time. We are going to try a stim (stimulation) treatment (a machine that will shock my muscles to see if they will move at all). I am very anxious to try.

My good church community has a meal schedule for me so I am well loved and well fed for the next couple of weeks.

I am still having a hard time trying to be patient. My arm is very heavy and I am tired of walking around like a zombie, but I still think it’s going to be a good, good day.

Dictated by Carina, Typed by Lesley.

pics of hairdo

reddish for fun and a shot of me from the mall

the waiting is the hardest part

Dictated by Carina, typed by Lesley.

I know that people are asking for updates, so this is the best I can do for now.

On December 11, I had an infusion of the new treatment that my doctor’s had been recommending called Avastin. I got it at UC Davis (because I live in Sacramento, this is where my community is and it made the most sense). The infusion was in my left arm and it took an hour and a half and when it was done, about half an hour later, I could no longer move my left arm or leg to its normal ability. This persisted through the weekend, causing me a scare because all of a sudden I was unable to take care of myself.

I called my neurosurgeon in San Diego because he has always been very thorough with my care and he said that I needed to immediately go to an ER and tell them about what was going on and to get a CT scan to make sure that there was no brain bleed. I also called UC Davis to tell them what happened and they took 3 hours to call me back and tell me the same thing, to go to the ER.

I ended up flying to San Diego because my doctors in San Diego provide me with better care. I was admitted into the hospital for the night. A CT scan revealed no brain bleed (Yay, that’s what we wanted!), but a lot of swelling on the right side of the brain pushing over to the left. So I was immediately put on steroids to reduce the swelling and I was also given a drug called Manatrol to suck all the fluid out of my body. Neither of these things would help in the immediate sense to give me movement in my arm and leg on the left side.

I was sent home from the hospital on high dose steroids for a day and I am now slowly tapering off the steroids on a week by week basis. Though all of this came by a surprise, I wish to extend my love and gratitude to my friends, to my family at church, to Scott and Jennifer, and to countless people who have offered to help me in anyway they can, just to make being an invalid a little easier. I have tried to be strong because I thought that’s what God wanted me to do in all of this and it has been hard and I have lost my hope a couple of times but because of everyone’s help, each day gets easier and I can stretch my left arm a little bit, even though it still won’t move like normal. I can walk for the most part, but I look funny on my left side because my arm is basically dead weight.

Last night my friend, Marianne, took me to the gym to try and loosen up my muscles with a spa treatment. I was very buoyant in the water and almost fell over but got to relax for a little while, which was nice. I still cannot stretch out my arm, move it freely, or open and close my fist. At least my left leg is slowly coming back to life and if feels good to walk for the most part.

There have been people who have been so friendly. For example, a kind woman at the gym helped me get dressed after my shower because I could not do it myself. A stranger came up to me in the spa and asked if she could pray for my arm and she also gave it a massage. It is an uncomfortable practice for me to learn how to let other people help and love me when it is so hard to do things for other people. So a lesson I’ve had to learn is a little bit of humility and its been rewarding to watch how when I let someone help me, they seem to feel good about being able to be useful and sometimes just allowing them that opportunity is enough of a blessing for them as opposed to me slapping them in the face and rejecting their help.

Today I am excited to go out to a movie with a friend who struggled with breast cancer and who has been through quite a battle. We are going to go shopping and I am going to finally get some new walking shoes! We are also going to have a girl’s day at the movies.

I love everyone and I appreciate your prayers and support.

And Carina wanted me to type that I am awesome (she made me type it!!). And this is from Lesley – I love Carina and my prayers are daily going out to her!!

Peace Train

Here's a shot of me on the train ride home from tehachapi last month. It is from my fave seat on the train. The upper level, single seats just outside the train doors when you walk through the cars. A lone seat by the window. You can see from the pic that my hair is growing back in a messy fasion. I am bothered by it because I feel like I look a little like "Sham-bo." If you don't already know who that is, I'm not going to tell you. It's embarassing. lets just say that I have curls on top of my head and at the base of my neck. I feel like I've got a mullet forming.

to this, I say: NO-SHAM-BO!!!



Meanwhile, SN&R did a recent feature story on my little predicament: